I was touched by this women's story -- and her attitude towards difficult things...
Our first son, Jonah, came into the world 10 days late. It was my first baby and I had all these ideas about what his birth would be like. My whole pregnancy had been so good, and I had felt so healthy and strong. All of our ultrasounds that we had were fine. We never had any indication that there would be any problem or any challenges for our baby.
It was just this beautiful experience to be pregnant and to feel him move inside me. I was sure that I was just gonna let him come on his own terms. Ten days after his due date, my doctor said, "No, we need to induce you."
That day was so exciting. The birth was good, but when he was finally born, the doctor put him up on my belly. When I first looked at him, I could tell right away that something wasn't quite right. I didn't get very much time with them because they whisked him off my belly. All of a sudden, there was this flurry of activity around us. The respiratory therapists came in and they took Jonah and kind of moved him away from me. I remember my mom coming over and comforting me, and I just didn't even know what was happening.
I just remembered seeing his little ears. They looked almost like little flower petals that hadn't quite opened all the way. My husband, Jordan, was over by the nurses and he was kind of watching what was going on, and he came over to me and I remember him saying, "Julie, he has the most beautiful lips." I think he was in this moment of trying to process what we were experiencing. But it turned out that (Jonah) had a lot of problems with his facial structures. He had a cleft palate, his jaw was underdeveloped, his cheekbones were underdeveloped, and his ears were not fully open, like they had just started to develop and stopped midway through that development.
We didn't know what caused it or whether he'd be able to see or whether he'd be able to hear. We didn't know if he would have any kind of mental delays, but we loved him so instantly. It wasn't until the next morning after a night of changing diapers and trying to figure out how to feed him that our doctor came in and told us what his diagnosis was. He told us about Treacher Collins syndrome, which is a syndrome that affects the facial structures and development of the face. The other thing the doctor told me is, "I'm almost 100 percent sure that you are the carrier of this genetic disorder."
It was good to know what he had because we knew that he would be able to see. He wouldn't be able to hear with the help of a hearing aid. We knew that he wouldn't have any kind of developmental challenges. But I had this place in my heart that just hurt so bad because I knew that I had carried this thing . . . that wasn't my fault, but I felt the strange responsibility for being the carrier of that gene—that any children that we tried to have in the future would have a 50 percent chance of having the same experience that our sweet Jonah was having.
We knew that he was going to face a lifetime of surgeries to correct some of those things that he had to deal with, and it was all so overwhelming. I tried to put on a brave face and I tried to be really present and to be optimistic. But as soon as I could get up and I got into the shower—that's where I just fell apart. I just prayed that Heavenly Father would help me to know how to move forward.
The distinct impression that I received was that Jonah deserved to have a joyful mom. That there was a lot that we didn't know, and there was a lot that I couldn't control. But I could control how I approach the experience of being this mom. And so that's what I tried to do.
After a while, we just didn't think about his syndrome very much. We were just normal parents raising this little boy and that was beautiful. People were attracted to him and they wanted to know about him. My husband and I are—well, especially my husband—we're kind of private. We're not the kind that really reach out, but with Jonah, people just came to us. It was a heart-opening experience to watch how people just loved him right away.
Listen to the full episode here to learn the rest of Julie's story or read the transcript here.
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